Anti-nausea medication

Anti-nausea medication (sometimes called anti-sickness medication or anti-emetics), taken either as tablets or injections, can be prescribed by your doctor to help manage symptoms. This can be particularly important when starting a new treatment, such as anti-HIV  therapy, which is associated with a high risk of nausea and vomiting during the first few weeks. Adequate anti-nausea medication can help you adjust to your new regimen and make this initial period easier.

Many different drugs are used to treat nausea and/or vomiting. These include metoclopramide, prochlorperazine, perphenazine, trifluoperazine, chlorpromazine, domperidone, granisetron, ondansetron, tropisetron and nabilone.

Coping with nausea and vomiting

For some people, having to swallow large tablets or large numbers of tablets can itself bring on bouts of nausea. If you think this might be a problem for you, it might influence your choice of anti-HIV therapy. For example, you could ask to see the different drugs available and find out about the number of doses required.

Whatever the cause, do not feel obliged to 'grin and bear it' – nausea and vomiting can prevent you from getting enough food and nutrients and from sticking with your anti-HIV treatment. As well as asking your doctor about anti-emetic medication, the following practical tips may be helpful and can be discussed with an HIV dietitian:

• Eat small, frequent meals throughout the day rather than two or three large meals.
• Don't eat liquid and solid food at the same meal. Space them at least one hour apart.
• Avoid eating greasy, fatty, fried or spicy food. Instead, choose bland food.
• Try dry food such as toast, crackers, cereal, and fruit and vegetables that are bland or soft.
• Salty food such as crackers, pretzels and popcorn can help reduce nausea. Carry a packet with you when you leave the house.
• Don't lie flat for at least an hour after you eat.
• Eat food cold or at room temperature – hot food can worsen nausea.
• Herbal tea (e.g. peppermint or chamomile) or root ginger can help settle upset stomachs.

Changes in body shape

Changes in body shape

Three different patterns of body fat change have been seen in people taking anti-HIV drugs. These are:

• Fat gain on the abdomen/belly, between the shoulder blades, around the neck, or in the breasts.

• Fat loss from under the skin which is most noticeable in the arms and legs, buttocks, and face, causing prominent veins in the limbs, shrunken buttocks, and facial wasting.

• A mixture of both fat gain and fat loss.

The fat gain in the belly which some people develop isn’t made up of fat under the skin. Rather, it is caused by the build-up of fat within the abdomen. This makes the belly feel harder.

The majority of people who develop these changes experience a combination of both fat loss and fat gain, and you may often hear these body shape changes described as ‘fat redistribution'.

A few people may also develop small, isolated fat deposits, called lipomas. Typically, these occur in the trunk and limbs.

Changes in body shape can be accompanied by changes in the body’s metabolism.

The risk of developing body shape changes

It’s not known exactly who will develop body shape changes whilst taking anti-HIV drugs. However, there's good evidence that the risk is increased if you take the nucleoside reverse transcriptase inhibitors (NRTIs) d4T (stavudine, Zerit) or AZT (zidovudine, Retrovir also in Combivir and Trizivir).

It used to be thought that your chances of experiencing body fat changes were increased if you start taking anti-HIV drugs when you have a very low CD4 cell count. Recent research, however, suggest that it is drugs that are the cause of lipodystrophy.

It also seems that the following factors may increase your risk of body fat changes developing:

• Studies have shown that the longer you take anti-HIV drugs, the greater your risk of body fat changes occurring. One study showed that after three years of taking a combination which included a protease inhibitor and NRTIs, between 30%-40% of people developed some kind of body fat change.

• People who are overweight seem more likely to develop central fat accumulation.

• Fat loss is more commonly reported in women.

• Older people are more likely to report both fat gain and fat loss from the limbs, buttocks, and face. It may be that some of these changes are, in fact, natural changes which occur with ageing.

Avoiding body fat changes

Because the reasons for body fat changes in people taking anti-HIV drugs aren’t properly understood, it’s very hard to give clear advice about how to avoid them.

It used to be thought that the changes were only seen in people who took protease inhibitors, but in fact the changes are seen in people who have never taken this class of drug.

However, it is known that protease inhibitors can disturb the way the body handles fats and sugars.

There is good evidence that people who take d4T (stavudine, Zerit) and, to a lesser extent, AZT (zidovudine, Retrovir, also in Combivir and Trizivir) are at greater risk of fat loss. It is also clear that people who start treatment with a combination that contains a non-nucleoside reverse transcriptase inhibitor (NNRTI) rather than most protease inhibitors are less likely to experience an increase in their blood fats and sugars.

Although you can delay the chances of developing lipodystrophy by not starting anti-HIV treatments, you need to balance this against the very real risk that you will become ill if you do not start anti-HIV drugs when you need them. Also, remember that fat loss seems to be more common amongst people who start anti-HIV treatments when their CD4 cell count is below 200.

Changing treatment to avoid body fat changes

There’s no really strong evidence to show that changes from a protease inhibitor to an NNRTI will lead to an improvement in body fat changes. There is, however, evidence that this strategy might lead to an improvement in blood fats and sugars.

Changing from d4T or AZT to abacavir (Ziagen) or tenofovir (Viread) can lead to a very slow recovery of fat loss.

Stopping treatment because of body fat changes

Because changes in body shape can be very distressing, some people choose to stop their anti-HIV treatment completely because of them.

There’s no evidence that this will lead to an improvement in body shape changes, although it might help to normalise levels of blood fats and blood sugars.

If you are considering stopping treatment because of body shape changes, it is important that you are aware of the risks that this could involve and that you talk to your doctor about regular monitoring. If you stop treatment:

• Your CD4 cell count is likely to fall back to its pre-treatment level within six months or less, regardless of how high it is when you stop. It will continue to fall.

• If you had an AIDS-defining illness before you started anti-HIV treatment, you are five times more likely to experience a decline in your CD4 cell count to back below 200 (the point at which you become vulnerable to other AIDS-defining illnesses).

• If you stop treatment with a CD4 cell count below 200 then you are at risk of developing an AIDS-defining illness immediately.

• If you are taking drugs such as 3TC (lamivudine, Epivir), nevirapine (Viramune) or efavirenz (Sustiva), which take a long time to clear out of the body, you run the risk of developing resistance during the withdrawal period. If you want to start treatment again with the same drug or drugs, it or they may no longer work.

• If you start treatment again, your blood fats and sugars are likely to return to their normal level.

Treating fat gain

There are currently no treatments to reverse fat gain. Some people who stopped treatment completely have reported small improvements. Although changes in diet and exercise will help improve your overall health, they are not effective against fat gains caused by anti-HIV drugs.

There are, however, a number of experimental treatments which are being used to treat fat gain. These include human growth hormone, anabolic steroids, and a diabetes drug called metformin. Because these drugs haven’t been proven to be effective against fat gain caused by anti-HIV drugs, you may only be able to get access to them if you enrol in a clinical trial designed to assess how good they are when used in such a way. Ask your doctor if this is possible.

Surgery is being as explored as a remedy for fat gain at the back of the neck.

Treating fat loss

Various treatments to restore fat loss is being examined.

In particular, several forms of facial reconstructive surgery have been used to help remedy the appearance of fat loss from the face. The most widely used of these is called New Fill (polylactic acid).

Studies from the UK and abroad have shown that New Fill can reverse the appearance of facial wasting and lead to an improvement in a person’s quality of life, self-esteem, and confidence.

New Fill is administered by a course of injections into the cheeks, normally spaced over several weeks. The injections fill out the sunken area and encourage tissue growth.

It’s not known for how long treatment with New Fill will remain effective. So far, it seems that a single course of injections will help to remedy the appearance of fat loss from the face in most people for two years. However, it may last longer in some people. On the other hand, there have been reports of some people needing much more frequent treatment.

The most commonly reported side-effect is soreness and swelling in the area where the injections are given. New Fill is safe to use with anti-HIV drugs.

Some, but not all, NHS HIV clinics will provide free treatment to their patients. If you cannot get it for free, private treatment costs between £800-£1,200 per course.

Other cosmetic treatments for facial wasting that are being considered include fat transfer, collagen injections and hyaluronic acid.

A dietary supplement called NucloemaxX is being explored as a possible treatment for fat loss from the limbs and buttocks. Some small studies have shown that the use of the supplement can lead to a modest improvement in fat in the arms and legs even when d4T (stavudine, Zerit) and AZT (zidovudine, Retrovir, also in Combivir and Trizivir) are still being used.

Research suggests that a class of drugs called statins which are normally used to treat high levels of fat in the blood can also lead to a small improvement in fat loss caused by anti-HIV drugs.

Living with body shape changes

Body shape changes, in themselves, do not appear to be medically dangerous. However, they can cause physical discomfort and emotional problems. If you are becoming depressed ot lose your self-confidence because of changes in your body shape, make sure that you tell your doctor. Treatments for depression work well in people with HIV, and you might find a referral to see a counsellor or psychologist useful.

Changes in your metabolism

Anti-HIV drugs can also disrupt your metabolism – the way your body processes the things it needs to work properly.

Specifically, anti-HIV drugs can cause abnormal levels of blood lipids – cholesterol and triglycerides.

Cholesterol

There are two types of cholesterol. HDL cholesterol, often called good cholesterol, and LDL, or bad  cholesterol.

Levels of HDL cholesterol are often reduced in people with HIV and other chronic illnesses. High levels of LDL cholesterol indicate that you are at risk of heart disease, and increases of LDL cholesterol are often seen in people taking anti-HIV drugs.

If you have high LDL cholesterol, the following factors increase your risk of heart disease even further:

• Smoking.
• High blood pressure.
• A family history of heart disease.
• Being physically unfit.
• Age over 45 for men and age over 55 for women.
• Diabetes or insulin resistance.
• High blood sugars.
• Being very overweight, particularly with a lot of fat around the middle.
• Use of stimulant recreational drugs like cocaine or amphetamines.

It is particularly important to monitor LDL cholesterol levels if you are taking a protease inhibitor.

Triglycerides

Triglycerides are fatty acids derived from fat, sugar and starches in food. These travel through the bloodstream and are stored in tissues or in the liver.

Glucose

Glucose is a form of sugar found in the blood. High levels of glucose can increase the risk of heart disease.

Insulin

Insulin is the substance produced by the body to control glucose levels in the blood. Some people taking anti-HIV drugs need to produce more insulin to keep their blood levels of glucose normal. This is called insulin resistance. It may be necessary to have your insulin levels tested.

Symptoms of metabolic changes

Abnormal levels of fats and sugars in the blood can sometimes cause symptoms including:

• Tiredness.
• Dizziness (due to high blood pressure).
• Loss of concentration.
• More frequent urination.
• Thirst.

However, some people don’t notice any symptoms, even when they’ve had abnormal levels of fats and sugars for a long time and are at risk of heart disease.

Heart disease and anti-HIV drugs

Levels of fats in your blood may start to rise when you start anti-HIV treatment, particularly if you are taking certain protease inhibitors. Sometimes they can increase so much that it’s necessary to change your diet, start exercising, or take a medication to control them.

Large studies of people taking protease inhibitors have shown that they have a slight, but nevertheless significant, increase in their risk of heart disease.

If you have any existing risk factors for heart disease, your anti-HIV treatment should be carefully chosen to ensure that it doesn’t raise risk even further.

You should have your cholesterol, triglyceride and glucose levels monitored each time you have a routine clinic visit.

Looking after your heart

There is a lot you can do to help keep your blood lipids within safe limits. The information on diet, exercise, and stopping smoking in this book is a good place to start.

Lipid-lowering drugs

If you have high blood lipids, your doctor might prescribe lipid-lowering drugs. These are used to treat heart disease and hardening of the arteries. Three classes of drugs are available:

• Statins. This class of lipid-lowering drug has been used successfully in people with HIV. Statins are particularly effective at reducing levels of LDL cholesterol. Most statins can interact with protease inhibitors, but the drug pravastatin can be safely used with protease inhibitors. The main side-effect of statins is muscle weakness. Liver and kidney functions also need to be monitored.

• Fibrates. This class of drug lowers triglycerides and can also effectively lower LDL cholesterol. However, fibrates should not be taken if you have liver of kidney problems or if you are pregnant. On the other hand, fibrates seem less likely than statins to interact with protease inhibitors.

• Fish oil. A fish oil preparation that is rich in omega-3 fatty acids can reduce elevated triglycerides. However, you need to take a large number of pills every day for it to be effective. Fish oil can increase levels of HDL cholesterol.

Some drugs are also being investigated to see how effective they are at controlling glucose and insulin in HIV-positive people. These include metformin, sulphonylureas, and glitazones.

Symptoms

Peripheral neuropathy usually involves damage to the nerves in the feet or, less commonly, the hands. The symptoms can range from mild tingling and numbness through to excruciating pain that makes it impossible even to wear a pair of socks. Usually both sides of the body are equally affected.

Occasionally the autonomic nervous system can be affected, causing symptoms such as dizziness, diarrhoea and sexual dysfunction (inability to obtain or sustain an erection).

Neuropathy as a side-effect of anti-HIV drugs

Among people with HIV, neuropathy is commonly caused by certain medical treatments. It is a significant side-effect of several anti-HIV drugs – in particular, ddI (didanosine, Videx), d4T (stavudine, Zerit) and, to a lesser extent, 3TC (lamivudine, Epivir).

It can also be caused by other drugs prescribed for people with HIV, such as the antibiotics dapsone and intravenous pentamidine, the anti-TB drug isoniazid, and the anti-Kaposi's sarcoma drugs, vinblastine and vincristine.

If you take more than one of these drugs, the risk of developing neuropathy may be increased. If you have previously had neuropathy caused by something else, such as HIV itself, you may also be more likely to develop neuropathy from taking one or more of these drugs.

If you do develop drug-related neuropathy, it is important to stop taking the drug(s) promptly (but do get your doctor's advice before making any changes to your medical treatment). Once the drug has been stopped, the neuropathy may continue to get worse for a couple of weeks, but then it nearly always goes away over time.

In the meantime, your doctor can prescribe treatments to reduce the pain, such as carbamazepine or amitriptyline. In severe cases, you may need strong painkillers. Trials have shown that a drug called L-Acetyl-Carnitine can help reduce the symptoms of neuropathy.

Other causes

There are several different causes of nerve damage among people with HIV.

Some causes are not linked to having HIV. For example, anyone who consumes large amounts of alcohol or certain recreational drugs like cocaine, heroin or speed can develop neuropathy; the best treatment is to stop or reduce your intake of these substances. Alcohol-induced neuropathy needs specific vitamin treatment from a doctor.

Neuropathy can also be caused by a shortage of vitamin B12, which can be relatively common among people with HIV. If medical tests confirm that you have a vitamin B12 deficiency, your doctor may offer supplements of vitamin B12 by injection (tablets are largely ineffective because vitamin B12 is poorly absorbed in the gut). Increasing the vitamin B12 content of your diet may also help a little; foods that are rich in the vitamin include fish, dairy products, kidneys, liver, eggs, beef and pork. Ask to see a dietitian at your clinic for more advice.

Some infections can cause neuropathy directly, such as cytomegalovirus (CMV) or HIV itself. These cases are best treated by tackling the underlying cause, such as using anti-CMV drugs or anti-HIV drugs, respectively